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Tuesday, 12 June 2012

When winning isn't enough

As many of you know, I spent yesterday making sure that as many people as possible heard about the death of Karen Sherlock and the fear and exhaustion of her final months.

I did what a writer does. I wrote. Then I wrote again. I tweeted the great and the good, charities and politicians and I made them hear her story. But all through the madness of a story spreading around the world, I don't need to think. It's only when the messages slow down and the journalists stop calling that I face what the fury of writing tried so hard to soothe. Karen had died and I couldn't save her.

In the epic fight against the Welfare Reform Bill, we campaigners chose our weapons. Some polished the sword of truth to use against large corporations like Atos, responsible for so many of these terrible decisions that ruin lives. Some concentrated on the shields to protect the Independent Living Fund, others on exposing the lies of our politicians in parliament. Yet more dug up news stories and challenged social care cuts.

But I focused on Employment & Support Allowance and most specifically, Government plans to time limit sickness benefits for all but the most desperately ill or disabled to just one year. It's ironic that I came to be known for the Spartacus Report, exposing the myths behind Disability Living Allowance, because actually, it was not my greatest battle.

So, last night, exhausted and horribly deflated at the news that had had hovered over us all for so long, finally a reality - the death of one of our warriors - I suddenly felt enormously and helplessly angry.

I'd worked with Liberal Democrats for months to persuade them, oh so carefully to first hold a vote at their annual conference, and then to support it. I'd put aside my own politics at a time when few others would. Finally after months of planning, they pledged for

" Liberal Democrats in Government to oppose an arbitrary time limit on how long claimants can claim contributory ESA."

I won! Of course others were involved, but this was my very specific battle. I persuade the Liberal Democrats to oppose a policy that I knew would be dangerous, I knew would cost lives like Karen's

I can't tell you the excitement of that day. We won!! It was the first big breakthrough of our campaigning, the first time anyone stood with us, heard us, defended us. You can read about it here.

For months and months and months, I ran a campaign to lobby peers about the time limiting of contributory ESA. I don't know if anyone ever campaigned to peers in that way before. We emailed, we prepared briefings, we built relationships with individual peers we respected, we wrote endless articles and sent them in to parliament. We built spreadsheets to make it easier to contact peers when a particular issue cropped up. We pored over debates, we live tweeted every session of the Lords stages of the bill to make sure as many sick and disabled people saw democracy in action as possible, to hold peers to account.

And we won! We did it, we achieved what the media and the opposition failed to do or in most cases even tried to do. We won!!! We won every ESA vote in the Lords in a flurry of glory that left the mainstream media playing catch up. Do you remember Spartacii? Do you remember how it felt that day? We'd stayed calm and reasonable and intelligent. We'd put our case forensically, we'd pleaded and cajoled - some even begged. We'd built a database of last minute waverers and focused our efforts in the last few days on convincing them we fought for justice not special treatment. Do you remember? We did it.

And we won!!! We won for Karen and the 700,000 like her who would eventually lose all of their ESA under this most arbitrary of cruelties.

But I sat with my glass of wine last night and I wanted to scream out loud, to howl like a wounded animal "But we won!!" We beat you fair and square and you cheated."

Most of you reading will know that despite all of our work, our endless endurance, our David and Goliath resilience and belief, this Government cheated us. They cheated people like Karen.

They used the archaic convention of financial privilege to simply overrule the will of the Lords; they used their party whips to ignore the grassroots of the Liberal Democrat party, supposedly their coalition partners; they ignored every main charity and Disabled Persons Organisation and campaigner. They ignored their own Conservative peers who expressed doubts and concerns.

With arrogance and ignorance they simply abused their power and swept us aside.

Daily Karen asked me "Will we win Sue?" "Will we stop the time limit?" Frightened for her family and how they would survive. And I couldn't answer. I knew we should, that if there was even a scrap of justice left in our democracy we should be able to stop this nightmare, but I knew too, that a government that had lied and cheated their way through welfare reform were unlikely to ever back down.

Daily with a terrible, fragile hope in her tweets or emails, an urgency and a fear, Karen asked me "Will we win Sue?"

And days, even weeks after the bill had passed, she was still asking me "Surely we can still do something Sue? We won??" And I had to tell her gently, over and over that we'd won the battle but lost the war. We'd won the hearts of minds of those who mattered, but someone else had won their souls.

So Karen spent her last months fighting to escape the terror of the time limit, appealing, gathering "evidence" to prove what should have been as plain as day - she was ill and she needed our support.

And she won too. Just two weeks before her death she heard that she had appealed successfully. She had finally been put in the Support Group of ESA, meaning she would not be subjected to the time limit or forced to seek work she patently could not do.

Then she died. Again, it was too late. Again, the system had failed her. Again she was cheated. Cheated of the security she had fought so hard to win.

AND I DIDN'T WANT TO BE RIGHT.

When I warned and urged and pleaded, I didn't want to be right. I knew this would cost lives, or at the very least make them miserable and barely worth living.

When the welfare reform bill passed I warned politicians that time limiting ESA would be the single biggest issue come election time. It would haunt them, possibly haunt the Conservatives forever. An emblem of cruelty that really did cross the line of decency. I promised them that I would make sure of it.

37 comments:

You write so movingly Sue. I read your blog daily, and I feel inspired, encouraged, enraged. Most of all though, extremely grateful that there are people like you in this world.I am facing my own battle with the DWP at the moment, and trying desperately not to allow it all to further exacerbate my health condition. I know at some point it will.I will never forget the name Karen Sherlock. I will stand up and say her name during my WCA assessment, I might even ask for a one minute silence before we proceed. Lest we ever forget our fallen angel.

I agree with you its very sad.its just legal bullying only a weak person feels the need to bully another.

People went to war to fight against people like this Government and they just don't learn, they talk about going forward we are going back, it boils my blood to think people went to war to save a country only for some other group to screw it up.

The mp's don't care anyhow to them it's a luxury lifestyle they'd be giving up if they made waves

All we can hope for is for someone to die who has contacts and wont let it rest someone will fight to the bitter end and that justice is served on those responsible

i have known most mp's in my lifetime and to me they have always been scum and for the life of me have never understood on who would have ever voted for them in the first place That mystery will last me a lifetime sometimes i think the public just like a menacing lying stinking government and if that is the case then i should have left the country years ago

At least in Syria you know your enemy you can with others fight your corner and stand win or lose shoulder to shoulder

in this country it's different find those who are the weakest and kill them off with stress keep it private behind there closed doors and the public will be none the wiser on their death

When this government were countered by decency, morality, humanity and truth they simply abused their power to force through their blinkered ideology and arbitrary cuts. They drip fed a campaign of hatred towards sick and disabled people especially in the tabloid media and distorted statistics in their press releases to suit their own filthy agenda. We read their lies open mouthed, shocked to our very core at the abuse being inflicted against us. We wrote to them, we shouted, we implored them to do right by us, they ignored us.

A minute silence for Karen is a good idea. Let's do this? Let's all stop at an appointed time and share a moment for Karen out of respect and solidarity.

I send my sincerest condolences to Karen's family and friends. This is a sad time indeed for all.

sue I have the greatest admiration for your work yesterday. I don't know how you did it when you recently came so close to death yourself. Karen's death made us both sad and angry. No-one should be made to suffer because they are sick. Freud gives me the impression he is not mentally well. Maybe we need to play dirty it's not in our nature but maybe. RIPKaren.

I really struggle with this subject. It makes my post-traumatic stress flare up like a bastard. I've rarely been violent, but at times like this the urge rises in me like an unstoppable tide. Because unless the people responsible are hurt as much as they've hurt us, justice has not been done. It's at times like this I think I could do with a CPN!

We all feel like that Jan that's for sure those that have died will never see justice and we must make sure at some point that they do and their families can be at piece as to how they will get justice only god knows but i cant see this country ever giving to themthey talk about Syria as bad and yet there bad themselves

A wonderful post Sue, you have done so much for thousands of people up and down the country.

I do however have a slight criticism of your faith in politicians and the democratic process at this time in our countries history, we have NO democracy and the politicians apart from maybe a handful are All liars and cheats, I wouldn't trust one If I was on fire and needed someone to P##S on me?

Yesterdays news was very sad, I'm sure many people shed tears but these sorts of cases are going to increase, more and more people are contacting me on a daily basis with horror stories, their fear is easy to see, it's not an exagerated fear like IDS would have the media think, it's a true fear that the sick and disabled people of this country are desperately trying to fight just to survive, as I've repeatedly said for ages now, we are entering a period of Eugenics Ideology that this world hasn't seen since the second world war?

I'm not mad I just see the reality of what's going on.

God Bless Karen and all her family in this time of pain and suffering.

I fully agree Paul and I'm retired from the bank of England if i was fit and running the country all of those involved at atos and the DWP and IDS etc would be spending many years behind bars that i can tell you and hopefully in years to come that's where there'll all end up

Due a very touching tribute.I remember the day very well when the WRB was being debated in House of lords. I too remember how uplifted I felt when we won the vote. Alas, like you say we were cheated by the HoC and their archaic law of "private"privilege" Evil pure evil. I too feel anger and rage at what is happening, I also agree with Atos Victims Group assessment in that it is Eugenics ideology, what else could it possibly be? How many more people have to die in these circumstances?I have taken the decision to withdraw my appeal for CB ESA, I sent off the letter yesterday, I just couldn't face the psychological pressure it put on me. In a way I feel defeatist and angry that I am letting them off the hook without a fight, but I also feel somewhat relieved. I spent my working life 30 years caring for others as a registered nurse, I was medically retired following a severe assault whilst on duty and now they are taking away my benefit.

Well stuff them, they will not take my life. I will get by, a lot more financially worse off but hopefully psychologically better off.

I too wanted to scream last night Sue, I felt like running out into the street, grabbing the first person I saw and shouting 'do you know what's happening in this contry? A woman spent what turned out to be the last months of her life stressed anxious and afraid because someone had decided it was OK to make her have to fight the system, whilst being very poorly indeed. I still want to shout about it. I want to scream 'wake up! Wake up! These cuts are being done in your name. Say you don't want this evil being done in your name!'Someone somewhere made the decision to put Karen in the WRAG...whatever 'orders' they were following, whatever 'policy decisions'. I want blame apportioned. Point the finger not just at the top to who made these inhuman hoops that Karen, and others like her were and will be forced to jump through, but the individual who made that decision. Don't let them hide behind the excuse of 'just following the rules' - let's drag him or her out from behind the desk and justify why that decision was made.

you are right. There isn't time for polite and reasoned argument any more. As Sue writes, the whole ESA time-limit campaign to the Lords was "calm, reasonable and intelligent". And then campaigners, the very ill, the very disabled, were simply shafted. Many people are now dying as a direct result of government policies. Does anyone have any information about any legal challenges which are being made? This wicked state of affairs simply has to stop. Major conferences of GP's have voted unanimously against the ATOS WCA. Does that count for nothing? Probably, given that the ConDems totally ignored medical opposition to the NHS bill.

Sue - I'm well aware how extremely ill you have been on top of your daily battle with Crohn's, and how the anger and grief at Karen's death puts yet more strain on your precarious health - but one request: if you are able, would it be worth contacting Liam Byrne and Ed Milliband directly, and throwing down the gauntlet, the challenge,to come out of the woodwork and say that a line has been crossed and Labour HAS to come out strongly against ATOS and the WCA. I believe you were folowing Byrne's recent Beveridge 2 speech, which seemed to hold out some hope for us that Labour were going at last to oppose the scapegoating of sick and disabled people. Now is the time for Byrne and Milliband to show if they were sincere, or whether the speech was just hollow words.

Good luck with byrne and millibean ..yep we will need it too as byrne is not going to oppose anything in fact all of em have no intention of changing any of this ritten system.THEY started the whole bloody thing remember.

I have just read Karens Blog and what you wrote yesterday Sue, it was heartrending! RIP Karen, you did indeed Stand up get up and fight for your rights and won. I just wish this government would stand up and listen to us :(

This is one of the reasons why Britain is no longer great, if it ever has been...

The world has lost a beautiful, generous and empathetic person who paid the ultimate price in helping her fellow vulnerable people. It would be fitting if Karen could be posthumously awarded an honour for her very real and selfless dedication. Maybe someone could drop a hint to the 'powers that be'?

Karen, I never had the honour of chatting to you but your reputation speaks louder than any words could.

The primary aim of this website is to research and publish a definitive list of all deaths, where deficiencies in the current UK welfare reform legislation may have been a factor. PLEASE can visitors keep an eye out when reading the local, regional, and national press; when watching the television news or documentaries; when surfing the internet; for people who have left this way, and have not been remembered on the list? Thank you. Our hope is that by making it clear to whichever government is in office, the current welfare system is unsafe and currently not fit-for-purpose.

Sometimes in life there are just no words to say.. only thoughts are left.If one day the country does not wake up to what these bastards are doing then we all slumber on in to an abyss.This abyss will be dark deep and colder than anything we have ever seen.It will give rise to who knows what but i suggest we have seen its like before and we have learned nothing.Although that is not exactly true because some of us have learned and we can see.There can be no better measure of any society than how we look after the sick,disabled,vulnerable and the poor amongst us.This government values nothing more than what they call the capitalist system but in reality the system is not capitaism as not ALL can partake and benefit from it as they have hijacked it to favour those who WE elect to run our political system and they in turn favour the bankers and the so called great and the good and we are ignored, demonised and used as cheap labour by criminally owned and run so called work fare providers .All the while those bastards in Downing Street fill thier boots and the country slumbers on in to the abyss all the while being fed total bullshit by the media.It never occurs to the general public that anything is wrong with the system until it actually affects THEM.Hmm Cameron can leave his kid in the pub and nothing is said while if it was a single mother or family on benefits then the horns would blast in indignation and the papers would run a slag off piece.Yet its ok to dump people under london bridge at 4 in the morning and show NOT ONE ounce of duty of care,if it was your KIDS cameron what would you think then eh...what if one of these poor people had been beaten up ,satbbed or raped eh what the you buch of uncaring idiots.The bastards milk us all with the subsidys they recieve whilst in the House...food drink all cheap...and you can forget to mention 165 quid a night for staying somewhere you actually got for nowt and it seems to be ok......Oh i could rant on and on BUT WE KNOW all of this an more and the dangerous thing is the general public dont and dont bloody care and thats the calculated risk these policy makers gauge before they implement any of thier nazi ideas becaause thats what they are.Denial of rights,demonization of certain groups in society...blatant use of private companies in tax payer funded social concerns (nhs ,police ,etc etc) tax payer funded bail outs of private companies...banks banks and more bloody banks...yep we have seen ALL of this before.We know it they know we know it but all the while the majority take no notice then they are free to run amok.....and the abyss calls and more people will die as a result.WAKE UP UK WAKE THE FFFFF UP

As long as they pay the 50 million a day to the EU, bail out their buddies in the banks, give 1 billion to India (to pay for the Indian Space Programme), as long as they send 30 million a year to Polish families on benefit, they will ignore, pity and dismiss the British people who are treated malignantly by a system which is so huge and so unmanageable, that it has ended up doing the very opposite for which it was designed. I just tripped up on your web site but can say with heartfelt thanks that I no longer live in the UK because the only way to change things now is on the streets. Bless you all and may you find comfort in God and if you do not believe in Him then may you find it in one another.

So how do you fight and win against a completely ruthless and brutal enemy with no empathy, no compassion, no conscience, no decency, no remorse and no shame, who will cheat if you beat him legitimately and will do absolutely anything no matter how dishonest and depraved to win?

In the Vietnam war the Viet Cong couldn't beat the Americans on the battlefield in head on combat because they had superior weapons, so they used irregular hit and run non-conventional guerilla tactics that played to their strengths and exploited the Americans weaknesses which wore the Americans down through attrition which eventually forced them to flee.

I am very sad and angry about Karen's unnecessary death. I remembered her name from campaigning groups I am in. It is with painful poignancy that I read back over those that I still have saved, including her letter to her MP who was I believe supportive of Karen. I hope this MP will now make huge waves.

By all means let us remember her, with dignity and with compassion, and as a great writer and campaigner. But she died not because of but despite the best efforts of the NHS: the NHS didnt kill her. And she died not because of but despite the many thousands of pounds that poured into her bank account every year from the UK Welfare Rights system, not because it failed her. She was frighterened of change the same way that some people are frightened of spiders in the bath. Spiders dont kill you. Logically therefore, fear is the main enemy.

Fear is indeed the main enemy but when the government know that fear kills and goes ahead with policy's that in some people will be fearful of in my book that's murder intentional or unintentionally depending on your age I'm from the old school so i class it as The psychology of killing in where you know that you can kill someone by just making another person go mental by making them believe their fit when there not for political gain

The person on the end of receiving daily letters and phone calls panics and can kill themselves either without realizing what is happening or in other cases they take their own life as they cant continue with the constant form filling and are left in a constant panic

I myself have been down this road where the stress has been so bad the police have had to be called as i have gone into a severe asthma attack and I'm not an asthma sufferer which leave me a danger to myself and others

I've broken my back but don't worry it will be okay tomorrowI've got BiPolar Disorder but don't worry it's all in my mindI've got degenrative arthritis but don't worry it won't hurt by TuedayI've got prostrate cancer but don't worry it'll be better by the weekend

A more stupid, insensitive, irrational and cuntish post I've not seen for a long time

I should add that my post above is not a reference to Karen Sherlock but to the many of thousands of people who are at this time very stressed by the DWP/ATOS and are on the verge of going mental with all the constant form filling and interviews

RIP Karen SherlockHer death is nothing less than premeditated murder. Grayling and Smith and their henchmen at ATOS must have been aware that their actions would lead to the deaths of hundreds, perhaps thousands of sick and disabled people. Perhaps one day they will be given a one way ticket to a certain gymnasium in the city of Nuremberg.

great piece of writing sue, compassionate and accrete. do you think that at a particular day of the week we should mass email edd milliband? or someone of your choosing. i have posted on hear a few times and i keep being drawn back to karen sherlock, i read her diary yesterday, what a trooper her and her husband have been. how on earth an atos decision maker could have placed this lady in to the wrag is not just incompetence it borders on corporate man slaughter. this assessor should at least be sacked, and not a word on this on any of the news channels, just buried. what is sick, is the fact that if thees greedy cretins make a wrong decision they get payed for it. then get payed again for another assessment and another and another and so it goes on with no accountability, disgusting.as for the lib dummys, what a spineless bunch they are? to merge with ca moron and his gang to form the condom crew what a liar dick smeg turned out to be. as for labour, who brought this dreadful bill in milliband, should give a definite answer and his views on what is happening to the likes of pussy, should be shouted from the rooftops. all the best steve

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.